Weekend Wrap-Up

Last weekend was about 60% lovely and 40% awful (wrote about that part yesterday...). But the good parts really were great, so I can't complain.

Friday evening we took the dude to the circus for the first time. I gotta tell ya, I was really hesitant on this one. I always swore I would never take my kids to the circus, even if they really wanted to go. "Let somebody else do that," I would say. Why, you ask? ::Confession time:: I'm afraid of clowns. Nightmares about clowns. When I hear "circus," I think this:

Oh. My. God. Do not ever, for any reason, Google "scary clown." This was the tamest, I assure you.

Add to that a little anxiety, which is usually triggered by loud noises and large crowds, among other things, and you have a recipe for disaster. Not sure what came over me, but it was my idea to take Jack to the circus, and I bought the tickets.

I waited until just a few hours before to even tell the dude. As any toddler mom will tell you, put off the toddler's questions for a long as possible. Anyway, I was super excited to tell him by this time, thinking he was going to be ecstatic. Can you guess how it went??

Me: Guess where we're going tonight!!

Jack: Um...I don't know. (looking kind of excited)

Me: THE CIRCUS!!!

Jack: (looking 0.00% excited) oh. Can we just go to the store instead?

Me: But there will be elephants at the circus...

Jack: Oh ok then. Is it kind of like a store? (He likes to shop...)

"Are you excited about the circus?"

"Can you please smile like you're excited so I can take your picture?"

Once we got inside, he was a little overwhelmed but starting to get excited. He even got a pair of official circus binoclars to watch the show (or the people in the smoking section, whatever)!

Note to self(ie): Excited, antsy toddlers make for blurry selfies

So the dude was excited once we got there. He's always been a people-watcher, so that was fun enough for him. Just as the announcement was being made to quickly take your seats before the show starts, the wonderful child for whom I was attempting to face my clown-fears turned  to me and said, "Mom? Let's go home now."

A short moment later, the whole place went dark as the ring master took his place. "Mom?!? Who turned out the lights??" Not sure what the ring master was talking about...I had the giggles. Then the show started and just as we'd hoped, this happened:

The wonderment that can only be seen on the face of a child.

I've got to give props to those circus performers. They managed to hold the attention of my busy 2 year old for the better part of 2 hours! We were hardly even out of the parking lot before he asked to go back to the circus. Made my heart glad!

P.S.-The clowns weren't even scary!! To be honest, they really didn't look like clowns, aside from very minimal make-up. I'm still afraid of clowns, though, and will probably have nightmares for a week after looking up pictures of clowns for this post...

Angry Zebra

Yesterday started out great. Then it all went to shit. Here's how...I'll start from the beginning, which was almost week ago.

As I've written about here, the dude began infusion therapy for his immune deficiency this month. All was going well for the first two weeks, except for some hyperactivity. No big deal; I got this. Then came dose #3. After his infusion  last Monday, Jack was a little drowsy, took a nice long nap, and woke up...high. He was yelling like a crazy person and running in circles laughing. It was kind of funny, but definitely worse than the week before. He seemed to be back to normal by the next morning. Thursday morning, he intentionally broke 3 toys within less than two hours. My child has purposefully broken a toy maybe once (?) in his entire life. Things just got worse from there--he wasn't just hyper, he was aggressive. He yelled at me and the hubs, he frequently swung at us; he even tried to push me down when I wouldn't let him have his way. His behavior was back to normal Friday and Saturday morning.

Practicing infusions on his therapy buddies, Iggy & ZeeZee

Saturday afternoon, we left the dude with my mom for an adults-only date night. His behavior while we were gone, as well as all day Sunday and some of Monday, was the stuff toddler-mom nightmares are made of. More screaming, aggression, throwing punches, and just being mean. I called his immunologist--she'd never heard of such a side effect. I talked to several experienced moms in online support groups who said their kids had reacted similarly to this particular drug, although no such effect is listed in the drug insert (or online). We needed a plan.

I decided to take him to the new indoor play area at the mall and meet up with a mom-friend, thereby accomplishing two goals: keeping the dude active and getting a little adult conversation. The morning could not have gone any better, I tell ya! He played so well, alone and with other kids. He shared, he used his manners--I was such a proud momma! We bought new shoes (such a good sale!!), had a mother-son lunch, and even got cookies as a special treat. 

Enjoying a fruit cup while I shopped...

Then we went home, and all hell broke loose. It started with a simple request to check his temperature, and well...

My sweet baby had a complete and utter meltdown. He yelled, he clenched his fists, he threw anything he could lift over his head across the room. He screamed at the top of his lungs until his face was purple. And then this momma called the doctor and had a little "Come to Jesus" meeting with the nurse, and then a very similar meeting with the pharmacist. We cancelled the next shipment and decided to give him a few weeks off before deciding if we will resume treatment with an alternative drug. And then we both sat on the floor and cried. No more Hizentra for this boy.

This post was truly difficult to write. It was hard to relive the meltdowns that broke my mommy heart. Watching your child lose control of his behavior to such an extent is awful; the pitiful, confused look in his eyes tore me to pieces. He didn't understand what was happening, and I felt useless because I had no answers; no solutions. It also gave me a new understanding, a new empathy, for parents and caregivers of children who struggle with these types of meltdowns daily. I chose to post our story because this information was not available to us. Had we known this was a potential side effect of that drug, we likely would have chosen a different one.

Zebras

This is a long story, so I'll just jump right in. If you've already heard it, feel free to skip to the next post. :)

In July 2013, Jack starting running a fever with no other symptoms. After running temp everyday for a week, we went to our pediatrician. She assumed it was something viral, and sent us home. Two weeks later, we were back again; still running fever. She gave him a full check-up and still couldn't find a source. After six weeks of still running fever, we starting running labs. SO MUCH LABWORK! I swear if it's possible to detect via blood test, we tested for it. Still nothing. After nine weeks of daily fever, it finally broke and was then recurring about 5 out of 7 days. Finally, on October 30th, we saw a pediatric rheumatologist at Children's Hospital in New Orleans. Jack's pediatrician was trying to rule this out because I have an autoimmune disease that manifests as moderate to severe joint pain, which doesn't show up neatly on labs.

The rheumatologist was very thorough and decided to run more labs. His initial opinion was not rheumatological, but instead related to his immune system. These new tests came back two weeks later; the doc was right. We were referred to an immunologist closer to home. In December, Jack was diagnosed with Specific Antibody Deficiency (of IgG). In my own non-medically-educated words...the immune system has several different types of immunoglobulin, which function as antibodies to fight different types of infections. IgG is the type of immunoglobulin needed to fight off viral and bacterial infections. A healthy immune system has 14 different IgG antibodies; Jack's body was only producing 3, and the amount of those three in his blood was barely traceable. His only physical symptoms were persistent, recurrent fever and little to no appetite, with a history of being resistant to antibiotics If you have no experience in Primary Immune Deficiencies, which we did not, you've probably never heard this expression. In medical school, doctors are typically taught "If you hear hooves, think horses," meaning, look for an obvious source first. Immunologists practice by the idea of thinking zebras instead of horses. Kind of cute, huh? Anyway, patients with P.I.D. call themselves zebras.

The first step of treatment for Jack was a booster shot call Pneumovax, which boots production of 23 different antibodies. He initially had a great response to the shot, but after 6 weeks was going back down. We decided to start immunoglobulin replacement therapy. We opted to have the medicine administered via subcutaneous infusions, which we can do on our own at home, versus IV therapy in a infusion suite at a hospital. Jack started treatment on June 9th, and gets an infusion once a week. We'll be rechecking labwork in another month to see if it's working. If it isn't, we'll be back at square one and will be referred to another specialist. If it is working, we'll continue treatment for up to 6 months, then take him off to "see what happens." From what we've been told, in some cases a few rounds of replacement therapy seems to clear up the condition, and no further treatments are needed. More commonly, the condition is life-long, but thankfully not life-threatening.

For more information about Primary Immune Deficiencies, please visit http://primaryimmune.org/about-primary-immunodeficiencies/.

You are Blessed in Order to Bless Others

Several months ago, the hubs won two tickets to Bayou Country Superfest. We had never been before and were really excited about the concert and the opportunity to get away, just us. We decided to get a hotel for the night, and after making a few phone calls, were able to get one night free. Yay!
As the months passed by, we became more excited, but as we entered the week of the concert, we faced several obstacles. On Tuesday, my mom, who was going to keep the dude for the concert, caught a terrible stomach virus. Wednesday afternoon, the dude began running fever. By that night, his temperature was 102.5, and incredibly persistent even though we were alternating acetaminophen and ibuprofen. Thursday morning we went to the doctor, who said it was "just something viral," and it would need to run it's course. By Friday morning, the dude's fever was under control, but he now had a horrible rash on his face...it looked like really big fever blisters all around his mouth and the edges of his nostrils. At this point, it was taking everything I had not to just cancel the trip and sell the tickets. It seemed apparent that "someone" just didn't want us to go! We persevered, and by Saturday things had cleared up. The trip was a go!

Temporary side-track (it will make sense later, promise!): for the last few months, I've been reading Ending Your Day Right by Joyce Meyer. I highly recommend it; each reading (a Bible verse followed by a paragraph or two to get you thinking) is just the right length. What follows is the reading for Saturday, May 25:
     "Be a Blessing Everywhere You Go
     'He [the benevolent person] scatters abroad; He gives to the poor; His deeds of justice and         goodness and kindess and benevolence will go on and endure forever!' 2 COR 9:9
     It is both good and scriptural to give to the poor--they should be one of your primary concerns. Look for people who are needy and bless them. Share what you have with those who are less fortunate.
    But it is also good to remember that everyone needs blessings--even the rich, the successful, and those who appear to have everything. What you buy or do for these people is not the real issue; they may not need the gift, but they need the love.
     We all get wear sometimes and need to be encouraged, edified, complimented, and appreciated. This can be done with words alone, but it is a nice gesture to add a gift when appropriate.
     Remember, God blesses you so you can be a blessing--not only in a few places but everywhere you go!"

OK, back to the trip. Saturday night I asked God to just give me one more sign if He was truly warning me not to go. It sure seemed that was the case with all the sickness! Sunday morning rolled around, and no sign. On the way to drop the dude off at my mom's, a friend and new neighbor called to ask if we were still going to the concert. They had been given tickets and a parking pass (!!) by a family member but couldn't go today...the seats were really good and on the floor, did we want them? I asked several times if we could pay for their tickets, but they refused, saying they wanted to give them to us because they had been given to them. We very gratefully, and very excitedly accepted their tickets and headed to Baton Rouge.
As we left town, we agreed that we needed to pay it forward. After all, that is why God blesses us, isn't it? (Told ya it would all make sense!!) I posted on Facebook that I had two tickets to give away, and within thirty minutes I had a taker. A former teacher of mine who is a single-mom of two boys, and really deserving of a little blessing. She and her son were excited for the opportunity to go, just as we were, and we had the joy of giving.
So I guess God really did want us to go on our little trip last weekend. He knew the hubs and I needed the alone time to recharge ourselves and our relationship. We only stayed one night, and were very happy to be home with the dude the next day. I know it's a little trite and overused, but seriously, God really does work in mysterious ways!

A few highlights...

I'm a self-proclaimed cheeseburger connoisseur, I've been wanting the try Five Guys, and it IS National Hamburger Month afterall!! The review: Burger was dee-lish! Fries left a little to be desired--we ordered the "regular," but I've since been told that the cajun fries are where it's at. Also, we saw Coach Les Miles there, and the hubs worked up the nerve to tell him hello. It totally made his weekend! (The hubs, that it. I'm really not sure how the coach felt about it...) 

View of the stage from our FLOOR seats! Neither of us have ever had  those before. So neat! That's Kimberly Perry of The Band Perry on the big screen on the right of the stage. This group put on quite a show, and did some really great covers. Also, the hubs is in love with this leather-skirt-and-thigh-high-boots-wearin' woman.

Another pic of the stage and The Band Perry

Brisket nachos. People--this was the shiznit. Seriously. 

Aaaanndd the hubs can have Ms. Leather Perry because up next was Luke Bryan and a whole lot of drooling from me! Yikes!

7 Quick Takes

Linking up with Jen again for one of my favorite blog series!

1. Blogging is not as easy as I thought it would be. :( Although the hubs would vehemently disagree, I don't seem to have quite as much to talk about as I thought. Maybe I should rephrase that--I don't have as many blog-worthy things to talk about. Then again, maybe I'm filtering out too many ideas...

2. I hate basketball. HATE. If the finals had ended yesterday, it would not have been soon enough. Basketball makes me long for football season...at least we don't have to watch football every.single.day.

3. The dude has a new found obsession with accessories. His dad is not real excited about it. A few weeks ago, as we were heading out the door to a doctor's appointment, the dude and I walked back into the house because I'd forgotten my sunglasses. They just so happened to be on the table next to his, and he insisted on wearing his too, and so it began. New favorite place to wear sunglasses? Church. This evening, he was making sweet eyes at a much older girl sitting behind us while lowering his shades to glance at her over the lenses. And then there's the shoes...the boy loves his shoes! Captured this gem yesterday...

Captain America t-shirt, sweatpants, and dress shoes, because that's how we roll.

4. The hubs finished another semester of grad school this week! Yay!! Only 2 more to go before graduation!

5. Next week is the last week of my part-time contracted job until August. I've already started a mental to-do list for the summer, mostly little projects--ok, mostly pins, because I'm addicted to Pinterest.

6. My best friend is graduating from college next week, and we celebrated with dinner last night. What a fun excuse to get all dolled up and get out of the house alone! We met at my house and drove to a really neat local restaurant for dinner. The nearly 24 hours of thunderstorms ended just before it was time to head out, and we only had to wait about five minutes for a table--unheard of at this popular joint! We each had a little cocktail, some appetizers, and our entrees were dee-lish! We talked and talked and laughed, probably a bit too loudly for the quiet atmosphere...but hey, it was fun!

7. I celebrated Mother's Day early with my little family today, and it was wonderful! I'll save the break-down for a future post, but I hope all of you have a wonderfully relaxing Mother's Day as well!

7 Quick Takes Friday

I came across this fun series through Grace's blog several months ago, and couldn't wait to get my own blog started so I could join the fun! The series originated here. This is my first attempt, so bear with me as I'm not sure of all the "rules," if there are any! :)

 1. It's not unusual that I come across fashion trends I just don't get. Currently, I just don't get the whole Peter Pan collar thing. Didn't look so good on Peter, and I seriously haven't seen an example of it looking good on ANYBODY over the age of 4. Can someone explain this one to me?

 2. I need a good book to read! The last book I read / re-read was The Robe by Lloyd C. Douglas. I read it for the first time in high school and several times since. It seems each time I read it, some new detail or way of thinking grabs hold of my mind, and as was in this case, my soul. I gave up Facebook for Lent this year in an effort to spend more time with the hubs and to give more effort to my spiritual life. I truly believe God put the memory of this book on my mind because he intended to use it to mold my heart again. Seriously, if you haven't read this book, check it out!

 3. How frustrating is a newly independent 18 month old?!? The dude is wanting to do more and more things for himself, which is great, don't get me wrong. It's amazing to watch him grow and learn new things every day, but it seems more often than not he's learning something I wish he hadn't just yet. For example: how to open the storm door and sprint outside; how to activate the weather radio and scare the crap out of his terrified-of-bad-weather mom; use a chair to climb up onto the table and run across it to adjust the thermostat at my mom's house; and lest I forget, how to very sneakily unplug the router and leave me wondering what's wrong with the internet for the better part of a day.

 4. Staying on the subject of wonderfully-frustrating kiddos, how do you deal with picky-eaters? As a picky-eater myself, I'm really struggling with this one. I don't want to force my children to eat something they don't like, but I don't know what to do when it's something he likes but refuses to eat because he just doesn't want it. Should I offer something else? Should I set a limit at only x-number of choices?? Advice welcomed!

 5. OK last kid-related quick-take, I promise! Have you seen this video? Cracks me up every time!


6. As you know, I'm new to the blogging world, both as a blogger and a follower. I do have a few faves tho, who unknowingly inspired me to give this a go. Check them out here, here, and here. I've also stumbled one these two just this week-- this one about being a SAHM, and this one, which belongs to a new "real-life" friend. Enjoy!

7. I don't have any real big plans for the weekend, which is a good thing. It's been a busy busy week, dear readers, the good kind of busy where I was able to get a lot accomplished. The only thing I wasn't able to do enough of was play! And that is what I intend to do all weekend! I hope you have a great weekend, and I hope you play as much as possible too!

Comment away!

The Intro

I'm not really sure how to start this, since I'm new to the blogging world and all, so I guess I'll just jump in!

My name is Jami. When I was a child, I was very imaginative, and the type that had my whole life planned out pretty early on. By about 11 or 12 years old, I was wishing it were possible to skip high school all together and go straight to college. I was ready to get things started! I wanted to get a few degrees, have "lots of letters" behind my name, and do something with my life that made a real difference in the lives of others. I just knew I was going to marry my high school sweetheart, have two or three children, and somehow stay at home with them AND work (ya know, the changing lives thing). I never really thought about how all that would work out, but I knew it would.

When I was fifteen, "the hubs" and I started dating. About three months later, we knew this was it. After high school came college and the Master's degree I had wanted for so long. The hubs and I were married in 2010, and our son, "the dude," was born in September 2011. Now I am a wife, and a full-time stay at home mom with a part-time job that takes me away from home only a couple days a week. This is where the blog site comes from; the idea of wanting "everything," and then starting to get it!

Please understand this blog is not one of boasting, nor of complaining of having too much--although I cannot promise there will never be a little complaining about other insignificant things. Lately I've found myself thinking that when a person is so blessed as to have so many dreams come to fruition, she cannot just sit around idly. No, each goal of mine that has been met, each prayer that has been answered has come with duties, responsibilities, and the requirement of being a good steward of each. And that, my new friends, is what this blog is about. Having different titles or roles in life requires great balancing skills, especially when one of those is "mother." Each day, I work to be the best mom I can be, the best wife I can be, and the best I can be at my "away from home" job. Some days I do an acceptable job, other days I feel like a failure in one area or another, but each evening I go to bed hoping and praying to do better, to be better, tomorrow.

So what do you do to stay balanced? To be a good steward of your gifts? Thanks for reading, feel free to comment always, and of course, following is appreciated!